I spent a couple of hours at Eason House today, but mom slept through most of it. Apparently, she hadn’t slept at all last night, so she was beyond exhausted.  Still, she was extremely restless.  She could barely hold her eyes open, but couldn’t stay still for more than 10 minutes at a time. I hope she is able to get a good night’s sleep tonight.

Starting this blog has had me looking back at old writings, and I’m reminded of how this journey began and how it has progressed over the years.  It makes me realize how many things I’ve blocked out, and going back to revisit those things in my mind can be almost more painful the second time around.

One of the biggest regrets I have is my lack of patience early on.  I guess I just couldn’t wrap my head around what was happening, and I didn’t know how to deal with it or where to find the patience that I needed.  As she slipped away, bit by bit, the logical part of me knew she couldn’t help what was happening, yet there was an emotional part of me that just wanted to shake her into listening better… paying attention… remembering what I’d told her to do – and not to do.

My lack of patience combined with her anger, depression, and defensiveness – ah, what a toxic combination.  I wish I had understood more about what was happening. I wish I’d known then what I know now.  I wish I could tell her how sorry I am that I wasn’t more patient and understanding during that time.

It’s pieces like the following one that are so painful to read now, but I hope by publishing them here, I can help someone else feel less alone.  This journey is emotionally exhausting; you have to remain strong to deal with the day to day, and often strength is the last thing you’ll be feeling.  Suddenly, you’re the parent, but who is this child?  Sometimes, you’ll feel like you’re sinking in a quagmire of guilt.  Just remember, you’re human, and at any given moment in time, you’re doing the very best you can.

If you’re going through this now, rest assured that the things you are feeling are a normal part of the journey. Consider contacting your local Alzheimer’s Association chapter to learn about their lectures and support groups.  You don’t have to face this alone.  Looking back, I realize it would have helped me immensely to know that these feelings were natural and perhaps with some guidance, I could have shown more patience.

I wrote this four years ago, almost to the day.

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February 17, 2008

If there was one thing I wish I had – I swear, it’s more patience. 

I was laying here miserable with the heating pad on my neck – it was around 10:45 and I was just about ready to call it a night and go to bed. Phone rang. My mom. Not good at such a late hour.

I can hear that she’s upset the minute she speaks. She says her furnace isn’t working. I ask some questions, which get me absolutely nowhere, then tell her I’ll be over. Of course, it’s pouring rain. I head over there, the entire ride telling myself to be patient…be calm…relax. This is going to be a frustrating experience, get over it. All of that sort of self-talk.

But, I never have *enough* patience. I never do. She gets upset. I get upset. She said horrible things like, “I just want to die” and “You don’t like me anymore”. I just want to cry. Honest to god, if I started crying, I might never stop.

I try, I try so hard. It’s never enough, though.

Never.

The thing is, no matter what you tell her, she won’t listen. And, you can’t reason with her. Even if she agrees, she’ll forget 5 minutes later. She had called some fly-by-night furnace company a couple of weeks ago and had them out. She couldn’t tell me why she called them or where she got their name/phone number.

From what I could tell at the time, they charged her $179 to change the filter and two hours of labor for who knows what, plus a quote for $550 to do additional work. She had scheduled them to come back the following week, and argued when I suggested canceling it. I let it go, hell, it’s only money, right? You’ve got to pick your battles.

I assumed they came back, but tonight, she said they never showed up. I have no way of knowing for sure.

Anyway, when I got there, it was 71 degrees in the house, but she usually keeps it around 76. I cranked it up to 80 and sat there for about 30 minutes – the room temperature never changed. The unit is running, but obviously it isn’t heating to the requested temp. So, I called Atlas Butler – they’ve always provided service for both of us, and in fact, I’m pretty sure she has a service contract with them. There’s a sticker on the furnace indicating they were just there in October and completed a regular inspection. I’ll feel a lot better having *them* look at it. She assured me she’ll never call this other company again — but who knows. In one ear and out the other. 

I hate that everything falls on me, but if it’s going to fall on me, I need to be able to handle *everything* — I need to know that she isn’t doing this or that on her own, because I can never get all of the information. I just get bits and pieces. It’s like a huge jigsaw puzzle with half the pieces missing. It just complicates things.

But, right now, there’s no way around it. She’s in the middle… somewhere in between independent and totally dependent. It’s frustrating as hell for both of us. I try to help and she resists, but she needs the help. She ends up getting mad or getting her feelings hurt. She cries. I lose my patience. I can’t cry – if I do, I can’t take care of things. 

I have to stay strong and I find myself getting angry when she crumbles into a pile of “poor me” pity. Hell, *I* didn’t ask for this either. On the other hand, I realize that for the most part, she can’t control her emotions. 

I just freaking HATE all of this. Hate.it.so.much.

I feel like the worst person on the face of the earth. At this moment, I’d like to crawl into a hole myself and never come out.

Not.an.option.

Atlas Butler will be out in the morning. It was warm enough that she is staying at the house (thankfully, it’s quite warm outside and will be for another day before it turns cold again). She has a space heater if she needs it, too, but seemed fine when I left. They’ll call me when they open to let me know what time they’re heading out, then I’ll call her and let her know. 

I’d like to just take the day off work so I can be there when they come.  (…But things are extremely tenuous in the office. I can’t call off…)
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Until next time…Carpe diem…

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